DEE-SWAS is used in examples to keep things clear. Many children, including my own, have been diagnosed under other names such as ESES, CSWS or LKS.

These anonymised examples show a range of DEE-SWAS presentations.

Initial benign epilepsy diagnosis
A child was diagnosed with benign rolandic epilepsy in primary school. Over time, their speech slowed, learning became harder, and behaviour changed. What first seemed mild was later recognised as part of the DEE-SWAS spectrum.

Stroke, cerebral palsy, then DEE-SWAS
A child had a stroke in their early years. They were left with hemiplegia, cerebral palsy and epilepsy. Years later, subtle changes like increased tiredness and changes in function led to an EEG and a diagnosis of DEE-SWAS.

Early brain injury and difficult decisions
A child had a brain injury around birth and developed epilepsy early. In the school years, they were diagnosed with DEE-SWAS. Despite multiple medications, development regressed and surgery was discussed as a possible next step.

Normal development, then sharp decline
A child developed typically until around age 6. Seizures began, followed by noticeable changes in thinking and learning. Later testing showed a significant drop in ability, leading to a diagnosis of DEE-SWAS.

School first notices change
A child was developing typically until around age 6. Their teacher first noticed a shift in behaviour including withdrawal and rigid behaviour. A tonic seizure led to a nocturnal epilepsy diagnosis. Behaviour and learning then declined dramatically. There were more clinical seizures and further testing led to a DEE-SWAS diagnosis. A few years on, the child has autism, ADHD and dyspraxia diagnoses and attends an autism school. There is autism and ADHD in the wider family.

Early epilepsy, then a second wave
A child had seizures in infancy and later improved. After a few stable years, new seizures and regression appeared at school age. They were then diagnosed with DEE-SWAS.

Genetic condition alongside DEE-SWAS
A young child with a known genetic condition developed DEE-SWAS with very high spike-wave activity. Multiple medications were tried to try to reduce it.

Loss of language and emotional control
A child gradually lost speech and the ability to process language. Daily meltdowns and distress followed. After a long search for answers, an EEG showed DEE-SWAS.

Ups and downs over time
A child does not follow a steady decline. Instead, they move through good phases and bad phases over weeks or months. Speech, behaviour and learning go up and down. Diagnosis sits within the DEE-SWAS spectrum.

Improvement in the teen years
A child lost speech and learning skills during childhood with DEE-SWAS. In the teen years, brain activity improved. They regained some skills and independence but still live with ongoing disability.

Illness-triggered epilepsy and developmental change
A child was developing typically until early childhood, when a serious illness led to epilepsy. By around age 7, she showed intellectual delay, impulsivity and reduced emotional regulation. She was later diagnosed with DEE-SWAS. There is a family history of epilepsy.

Medication-related onset or worsening
A child was diagnosed with epilepsy in early childhood and started on medication. After this, seizures, sleep and behaviour worsened. EEG showed near-continuous activity during sleep. The child was later diagnosed with DEE-SWAS, with medication suspected to have contributed to the change.

Structural cause and ongoing high EEG activity
A child with a brain malformation developed ESES with very high sleep activity that persisted over years. Multiple medicines and surgery were tried with limited effect. The focus shifted from resolution to long-term management and quality of life.

Return or persistence in adulthood
A child experienced ESES in early childhood that appeared to settle, then saw a return of significant symptoms in early adulthood. Ongoing sleep-related epileptic activity and cognitive changes continued. Transition to adult care was difficult, with limited specialist knowledge available.

Immune-related pathway and partial response
A child with long-standing ESES showed temporary response to steroids. Further testing suggested brain inflammation. An immune-based treatment reduced EEG activity for the first time, but required careful adjustment due to medication side effects and ongoing uncertainty.

It takes two people

A child needs two adults to manage when they are dysregulated. The child now barely speaks, so the parents don’t know how they feel and what they need. Nothing seems to help. One parent cannot do it alone. One parent stops working. A sibling spends more time away from home. The family feels the strain and the guilt. There is little practical support. Services respond as if this is the first family they have seen like this.

Siblings miss out

Siblings are no longer able to do the activities they once did or have friends over as often. The child with DEE-SWAS is constantly exhausted, has clinical seizures each day along with repetitive and unsafe behaviours. The needs of the child with DEE-SWAS are beginning to shape family life.

Needed support is not available

Care needs are high. What would help most is practical support at home, like cleaning, food preparation, and daily tasks. But the child is not recognised as having a disability with disability funding , so the family cannot access supports. Even when funding is available, it may not cover what helps most.

More than one child affected

Two children in one family have DEE-SWAS, with different levels of impact. Both have learning and behavioural challenges that are not easily understood. Appointments, work, and daily life become difficult to manage under constant pressure.

Strain leads to separation

Care is constant. Sleep is minimal. The pressure leads to divorce. To cope, the children are split between households. Care responsibilities continue in both homes, with little opportunity for rest. The child with DEE-SWAS and their siblings lose the experience of being together as a family. Each parent continues to carry significant care, often without a break.

Extended family cannot accept it

Grandparents cannot acknowledge what is happening to the child. They only way for the child’s parents to avoid conflict and keep these relationships is to not discuss DEE-SWAS, smile and act like everything is fine. A difficult decision is made that the child cannot be left in their care, due to fears seizures may be dismissed as tiredness or bad behaviour.

Needs double

A family is already supporting a child with autism and ADHD when another child is diagnosed with DEE-SWAS. They are now juggling two different sets of needs, with the stress of challenges each child faces affecting the other.

History cannot be spoken about

A child’s deceased relative had seizures and was on epilepsy medicines for decades. But epilepsy stigma from the past means important family history has been lost and is therefore unavailable to support the child’s care.

Life is a rollercoaster

Things improve, and it feels like progress. The family imagine life could return to normal. Then everything shifts again as nightly seizure activity ramps up unexpectedly. Being out in the community become a trigger. The child is dysregulated, runs off, lashes out. A few weeks earlier, there were no issues. The parent is left wondering what changed. Was there something they could have done differently?

Family meals no longer fun

A child who used to eat all foods with gusto will now only eat one food for weeks then that food abruptly changes to another food. The parents are trying to give the child a healthy, balanced diet but meltdowns ensue if the preferred food is not available and can go for hours until they go and purchase the food. Once the food is eaten the child can move on immediately.

Can’t afford to stay near support

Care needs increase and parents can no longer work at the same level. Income drops. The family struggles to afford living close to the best available medical, disability, and education supports. They are stuck in indecision, hoping things will improve. This goes on for years. There is little guidance to help them make good decisions. They are chronically tired and unable to think clearly. Long-term financial security for them and their disabled child is under threat.

It is not a parenting problem

Professionals and friends observe the child and freely give advice about behaviour and parenting approaches. But the child’s nervous system is overwhelmed. Everything feels like a threat. The parents have tried it all and know there is very little they can do. The focus becomes safety and preventing harm above all else. Parents are exhausted and completely responsive to the child’s needs. Advice like “just try this” feels out of touch with what is happening. They learn it’s best not to talk about it.

Siblings need to be protected

A child can wake up aggressive, with behaviours that are unpredictable and intense. Parents focus on keeping everyone safe.
Parents are also left trying to explain the violence to other children, in ways that feel fair, safe, and age appropriate. The behaviour is medical, not intentional. But the impact on the whole family is traumatising.

Holding on

Parents find it hard to accept that the child they knew is now a different child, still loved, but with an evolving identity and higher care needs. No one can say whether the child from before will return, or if this is the new normal. So they hold on to the small things that feel familiar, reminding themselves and their child of who they were and what they could do as if it is present tense.

Desire doesn’t match capacity

A child with DEE-SWAS has a strong desire to spend time with a friend and looks forward to a planned playdate. When the friend arrives, playing together is harder than expected. The pace of play, the noise, and the back-and-forth of deciding what to do can feel overwhelming. Over time, the friend gravitates towards the child’s siblings, where play flows more easily. The child ends up playing alone. They are left feeling sad and confused, unsure why something they wanted so much didn’t work out as hoped.

A day out is no longer simple

A child goes to a busy trampoline park for a party soon after diagnosis. Their parent stays close, constantly urging them to slow down and not run into anyone. The parent is worried a head knock, which can happen here, could be more dangerous for their child. The child feels restricted and a cloud hangs over the outing.

Inescapable appointments

At medical appointments, a child hides under a chair, screams, and tries to run away while their parent talks. The parent is distressed but needs to share information. The child hears conversations about themselves they may not understand or want to hear. There is no easy way to meet both needs.

Barriers to belonging

A child is unable to complete a religious sacrament that their siblings participated in, after the place of worship declines to make adjustments for their needs. The school connected to the place of worship does not intervene, due to policy constraints. The family begins searching for another place of worship that is willing to support their child. In doing so, they feel pressure to commit to impossible attendance levels in order to access that support. The relationship between the family and their original place of worship and school, once trusted institutions, is fractured.

Judgement in public

A parent takes their four children to the beach, something the family has always loved. Their child with DEE-SWAS still enjoys the beach but now often screams. A nearby adult repeatedly criticises the parent for not disciplining the child. The family leaves early, the parent in tears. The siblings don’t understand why and get upset.

Activity now feels risky

A child who loves diving underwater continues to do it in the family pool. But their parent worries about seizures and drowning. A family member notices subtle absence seizures in the pool and the pool is now discouraged due to fears. Something that was a fun outlet now feels unsafe.

Falling between systems

A family looks for activities to keep their child connected to the community. Mainstream sport, which they actively participated in before DEE-SWAS, are now hard and overwhelming. They are unsure if their child is disabled enough for disability group sports. There is no clear place for the child to belong.

Life becomes smaller

A child becomes less able to leave the house due to sensory overwhelm in public environments. The family adapts, with one parent stays home while other family members go out. Over time, this becomes the norm to do things separately.

Self-conscious

A child who is in recovery from DEE-SWAS still sees peers from their previous mainstream school after moving to a specialist setting. The peers are warm and happy to see them, and often say hello. But the child carries a strong awareness of what those peers may have seen during earlier periods of dysregulation and difficulty learning. When they see them now, they can become quiet or withdrawn, unsure how they are being perceived.

Friendships fade

Friends of the family struggle to understand why they cannot go out for dinners and other social engagements without the children, especially when seizures are not obvious. They don’t understand that the family are in deep crisis. The friendship ends as expectations are not met.

The impact of unpredictability

Plans are often cancelled at the last minute, depending on how the child is doing. Over time, this becomes harder for others to accommodate. Relationships begin to drift. The family is isolated, apart from those few friends and family who understand.

Others notice the change

Long-time friends visit and see how much the child has changed. The child becomes overwhelmed and cannot cope with play that was once fun and easy for them. The parents have to ask the visitors to leave early.

Something the child loved no longer works

A child who was once a strong netball player remains in their team as their DEE-SWAS evolves. At training, they run off the court or lie down. During games, they wander and scream, unable to follow the game anymore. The coach is kind and keeps including them, but the child is no longer really part of the game and doesn’t want to be there. It is highly emotional for the parents to watch the change. They begin to question whether staying is helping. Eventually, they leave the team.

Loved school, then couldn’t stay

A child who loved school, especially their close friendships, was now completely overwhelmed by schoolyard noise and crowding. The school reduced demands, offering breaks and creating quieter spaces. Despite this, the child continued to leave the classroom abruptly and spent much time wandering in the playground or colouring with a teacher’s aide. Over time, their day has been reduced to a few hours.

Reading disappears despite support

A child who had started reading lost the ability to recognise words. The school introduced targeted support and adjusted expectations. Despite this, reading did not return, and the child became increasingly aware of the gap when their younger sibling started school and quickly overtook them.

Falls asleep in class

A child developed DEE-SWAS and was extremely fatigued and struggled to stay awake in class. The school allowed rest breaks in sick bay and adjusted the day where possible. Even with these supports, the child missed large portions of learning.

Childcare falls away

A family needs to return to work but can no longer find anyone who can care for their child. Behaviours are intense and unpredictable. Nannies, babysitters and informal supports step away. The child now requires constant supervision from a parent. The family is left without childcare and unsure how they can return to work.

Behaviour escalates despite strategies

A child began showing distress, including screaming, lashing out at peers physically and shutdown in class. The school implemented behaviour plans and sensory supports. At times these helped, but when spike and wave activity was high, behaviour remained difficult to manage in the classroom. Other parents complained.

Loses speech in a supported environment

A child with cerebral palsy who had been communicating well began to lose words and understanding. Teachers adapted communication, using visuals and simplified language. Despite this, the child became quieter, less engaged and less able to participate over time.

A pathway with progress
A child was diagnosed with DEE-SWAS in primary school, with a high spike-wave index and significant impact on learning. Over time, with treatment and support, things began to shift. Now in early adolescence, he is keeping up with his peers academically. He no longer requires an individual learning plan and has recently been recognised for his academic progress.

Seizures disrupt the school day

A child experienced absence seizures and periods of confusion during school hours. Staff monitored safety and adjusted expectations. Learning was frequently interrupted, and it became difficult to maintain continuity. Staff didn’t feel confident to manage this safely.

Kindy derailed

A child who had thrived at day care was diagnosed just before starting school. They experienced sensory overwhelm, lost speech and became aggressive when distressed. The family was closely connected to the school community, with three older children already there. The school tried to support the child, but the child’s needs were hard to meet without clear strategies. The family felt increasingly overwhelmed and began to withdraw from the community and friendships.

Absconding due to sensory overwhelm and anxiety

A child began leaving the classroom when overwhelmed. They could not tolerate noise blockers. The school increased supervision with a 1:1 teacher’s aide and gave access to a quiet room with LEGO and colouring. Despite this, the child continued to abscond at times, and the focus shifted away from learning, toward keeping them safe.

Sensory needs become unsafe

A child who had been managing in the classroom began to seek sensory input by chewing on objects. The school introduced chew toys and other supports, which helped at times. However, the child continued to chew on unsafe items, including things picked up from the floor or bin. Keeping the child safe while supporting learning became difficult, and the parents were extremely anxious the child would choke.

Early pick-ups and family impact

A child experienced increasing anxiety and dysregulation at school. Even with support, the parent was often called to collect them partway through the day. Over time, this became routine. The parent eventually lost their job and faced ongoing difficulty finding work that could accommodate this level of unpredictability, alongside growing stress and impact on their mental health.

Partnership breaks down

A child’s needs became more complex and harder to interpret over time. The school and family were both trying to help, but the family heard a rumour that their child’s teacher was saying this was a poor parenting problem and the family is “difficult”. The parent had created resources and tried to explain DEE-SWAS, but without visible seizures as proof of epilepsy, it felt like screaming into a void. They became increasingly distressed, helpless and alone, and the partnership with the school began to break down.

Strong knowledge, limited output

A child showed clear understanding in conversation but struggled to process instructions and complete work. Teachers provided support and extra time. Even so, the child could not consistently demonstrate their knowledge.

Skills come and go

A child’s abilities fluctuated over time. The school adjusted learning plans and monitored progress. Despite this, skills could be lost and regained unpredictably, making consistent progress difficult.

Writing becomes a barrier

A child developed increasing difficulty with writing. The school introduced alternative ways to complete tasks, including technology. Writing remained a significant barrier to showing learning.

Friendships begin to fall away

A child who had close friends found it harder to keep up socially as DEE-SWAS progressed. Eventually they appeared to not understand how to play in addition to some changes in their mobility. A teacher’s aide was assigned in the playground to support participation. The child would stand by the teacher’s aide for comfort watching the other children play on each break.

Moves away from siblings’ school

A school encouraged a family to move their child to a different school to better support their needs. The decision was made with care and input from both family and school. It created separation from siblings and familiar routines, which was very emotional for the child and their siblings.

Processing speed mistaken for ability

A child in a support unit had structured support and experienced staff. As their needs changed, adjustments were made where possible. Their very slow processing speed was often mistaken by different support staff as low interest or intellectual disability. This led to reduced expectations and fewer learning opportunities, with the child spending long periods on an iPad rather than being supported to engage with learning.

Behaviour pathway, limited fit

A child with an intellectual disability who had thrived in mainstream prior to DEE-SWAS was moved to a behaviour-focused school after increasing aggression, distress and absconding. While the environment provided structure and safety, the high levels of dysregulation of peers in the classroom were difficult for the child to process. This led to increased agitation and confusion. They became increasingly unwilling to attend, and access to education declined.

Autism support no longer enough

A child with an autism diagnosis had established supports that had worked well. As their needs changed, staff adjusted strategies and increased support. Even with these efforts, the child’s ability to access learning declined. The supports in place were no longer enough to match their changing cognitive and communication needs. What was missing was guidance on how to support fluctuating and regressing skills linked to ongoing epileptic activity.

ADHD strategies fall short

A child who also had an ADHD diagnosis received structured support for attention and behaviour. As memory and processing declined, these supports were less effective. Learning became increasingly difficult despite ongoing effort.

Attendance becomes the goal

A child’s attendance became inconsistent due to fatigue, seizures and distress. The school worked with the family to support attendance where possible. Over time, simply getting through part of the day became the focus.

Home learning for flexibility

A child moved to home-based learning after school became too overwhelming. This allowed flexible pacing and reduced distress. It also placed significant responsibility on the family to manage education.

Parent navigating ongoing change

A parent worked closely with the school as their child’s needs changed over time. Adjustments were made and reviewed regularly. Despite this, the lack of clear guidance and the unpredictable nature of the condition created ongoing stress and uncertainty.

Therapy adds strain

A school understood a child’s presentation as anxiety and medical system related trauma and insists on psychology sessions. The child could not tolerate sitting in therapy or communicate with the therapist. Sessions were often cancelled, with ongoing financial cost to the family. When sessions did go ahead, the disruption to routine made it difficult for the child to return to school. The approach did not improve access and instead added strain to both the child and family.

Diagnosis required for support

A child in a private school was no longer able to manage full days and required a more supported setting. Access to a support unit in the public system depended on an autism diagnosis. Two assessors reviewed the child and did not provide a diagnosis, noting that the condition may not be lifelong and that recovery was possible. Despite having similar functional needs to children in high-support autism settings, the child remained in an environment that could not meet their needs. They attended reduced hours for over a year while the family sought further assessment. A third assessment was eventually successful, but the process placed significant financial, emotional and practical pressure on the family.

Coming soon - please share your stories. Email melanie@voicesofdeeswas.org

Coming soon - please email your health, education and disability system challenges - melanie@voicesofdeeswas.org

It’s still part of his story

A young adult, 32, was diagnosed in early childhood, with significant impacts on communication and learning. In adolescence, his condition improved, and he now lives independently. Some differences remain, including ongoing challenges with auditory processing. He identifies as neurodivergent. He is aware that others he meets now may not know this part of his history, but it continues to shape how he understands himself. He describes that time as something that was very hard to go through.

A full life, with differences

An adult was diagnosed with this rare epilepsy syndrome in early childhood, with seizures beginning the year before diagnosis. The seizures resolved during adolescence. For many years, he understood his experience mainly through the seizures. It was only later that he began to recognise how ongoing differences in language comprehension, self-expression and social confidence may be connected to the condition. These challenges can be frustrating, but they have not prevented him from building a full adult life. He has worked in a professional job, married and ha a child.

DEE-SWAS in older age?

Some neurologists have suggested that EEG patterns like those found with DEE-SWAS may be identified in adults more often than previously recognised. In some cases, this may reflect persistence over time, while in others it may be that sleep EEG was not performed in childhood, meaning the pattern was never identified.

“To better understand the progression of this electrographic pattern, longitudinal studies of children with known ESES with repeat EEG studies into their early and late adulthood would be helpful in the future.” Electrical Status Epilepticus in Sleep (ESES) in an Elderly Adult: A Case Report

Travelling for better care

A family switches from local care to a service several hours away, even across state lines.

The travel is longer and more complex, but care is more coordinated. Plans are clearer, communication is easier, and over time, fewer appointments are needed. The distance is greater, but the overall load is less.

It is worth it

A child travels long distances to access a specialist centre. The trips are tiring, expensive, and disruptive to family life. But the child improves.

For this family, the distance becomes part of what makes care possible.

Everything takes longer

A family travels interstate for a multi-day hospital stay. The logistics of getting there, staying there, and managing daily life around the visit take more time and effort than the appointment itself.

Care split across hospitals

A child’s care is shared between a local hospital and a specialist centre several hours away.

Appointments are spaced out to reduce travel, but during periods of instability, visits become frequent and intense.

The family adapts, relying on aunties and uncles and friends to manage both care and everyday life.

Planning for every possibility

A family prepares for each appointment as though it may turn into an overnight stay. They pack medication, food, clothes and chargers, anticipating delays or unexpected admissions. Travel becomes something that requires planning, not just attendance.

Siblings stay behind

One parent travels with the child for care, while the other stays home with siblings. Family life is split across locations, with care needs shaping who goes where. Time together as a whole family becomes less frequent.

Trying to make it manageable

A family groups multiple appointments into a single trip to reduce travel. They stay overnight, see several specialists, and try to make the experience manageable by planning small activities in between. The trip becomes both medical and logistical.

Making it work

A family travels long distances regularly for care. They build routines around the journey, packing food, organising entertainment, and adjusting expectations. The travel becomes part of how they manage the condition.

Local care is not enough

A family seeks help locally but is unable to access the specialist support their child needs. They turn to services further away, where care is available and more responsive. Distance becomes necessary to be heard.

Finding the right place

A family searches for care that matches their child’s needs. Recommendations from other families guide their decision. They choose a service far from home, not because it is convenient, but because it offers the best chance of support.

Not eligible for help

A family is struggling to keep up with hospital and medical bills.

They are told they do not qualify for support because their income is too high.

On paper, they are managing. In reality, they are not.

Changing how the family lives

A significant portion of the household income goes towards medical care.

Budgets are reworked. Other expenses are reduced or stopped.

Some supports are delayed or missed because they cannot be afforded at the same time.

Planning around costs

Care is scheduled with finances in mind.

Appointments are timed to manage out-of-pocket costs. Payment plans are arranged where possible.

Managing care includes managing how to pay for it.

Looking for any support

Families search for grants, subsidies and programs that might help.

Eligibility criteria vary. Some qualify, many do not.

Waitlists can be long, and support is not guaranteed.

Two systems, different access

Access to financial support varies depending on where a family lives.

Some families are able to access additional coverage or funding. Others in similar situations cannot.

The level of support available is not consistent.

Debt becomes part of care

Medical costs build over time.

Families take on loans or long-term payment plans to manage expenses.

Debt becomes part of how care is sustained.

Holding it together

Even with insurance or partial support, out-of-pocket costs remain high.

Families describe periods where basic expenses and medical care compete.

Keeping everything going requires constant adjustment.

It depends where you live

The type and level of support available depends on location, systems, and eligibility rules.

Families share information with each other, trying to work out what might be possible.

Access to care is shaped not just by need, but by circumstance.